Lpin1 awareness and support group | Community
Lpin1 awareness and support group
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24.01.2022 Hello Everyone! This is Valarie, Jackson's mom. Jackson's genetics Dr. from Children's hospital suggested that we get Jackson's nose swabbed every time he gets a cold/flu so that we can figure out which virus's cause the episodes and which ones do not. I think this is a good idea because if we can figure out which ones cause the problem maybe they can come up with a shot to prevent it, like the flu shot. Also, I pray all the time for Hudson's recovery and am amazed how strong these kids really are.
22.01.2022 The beautiful late Vacher sisters, Ellie and Rebecca Vacher.
20.01.2022 Well our little man Hudson is now home after 4 months in hospital,he is doing well,he is sitting up by himself and getting stronger all the time,early warning signs and calorie intake are a very important key into keeping our kids safe from future episodes,I hope research in years to come will help,thankyou all for praying for Hudson he really is a miracle little boy xxx
19.01.2022 Hi everyone Andy Olive here (Tom's dad). Letting every one know little Hudson Stokes has been in hospital since 13th april. It was a severe episode but the little fella is still with us and slowly recovering. He has some movement in hands and feet but his muscle recovery has a way to go. Im asking everyone on this page to pray for Hudson and family, Christian or not.... If only half do it it is still over 200+ prayers, the family, and in particular Hudson's body needs some help. He is still on a ventilator and his ck level in his blood are back to normal last we heard. The CK levels got up to 330,000 normal for kids I think are 25 250 Any posts to wish them well on this site would be ok as well let this family know they are in our thoughts and prayers and they are not alone. As a father of a living lpin1 sufferer (Sarah) I know that it could be my child fighting for life any given day. Any support would be appreciated when you are feeling so helpless. Brendan and Simone stay positive that he will get over this. I'm praying for Hudson to stay on this earth, outlive you guys, and recover fully. Years ago they knew nothing about this - at least we have new knowledge on our side as well. Talk soon Andy and Trudy olive
19.01.2022 Its with a heavy heart I say that today we were contacted by a family who's 4year old daughter passed away last Monday from an episode of lpin1 rhabdomyolysis. Our thoughts go out to her family and friends xxx
17.01.2022 Young Hudson Stokes has been moved to a ward after being in intensive care for 5 weeks. We wish him a quick recovery and are thinking of him and his family.
16.01.2022 Today we drew the raffle for our first fundraiser. Firstly we thank our sponsors, Worldmark Golden Beach, Daisy's Place, Golden Beach Tavern, Caloundra Bigscre...en Cinemas, Bellingham Maze, Australia Zoo, The Ginger Factory. Also a big thank you to everyone who bought a ticket and our reliable small army of volunteers who helped sell tickets. Thank you to Amber Werchon Property for helping us with this first fundraiser. Looking forward to 2013 to begin to increase the profile of this foundation, and most importantly to save the lives of Australian children who aren't aware they have this disease. All winners have been notified today. A special mention to Peter Boyce from Butler McDermott Lawyers - without his guidance and experience, the foundation would not be up and running. See more
13.01.2022 This is just heart breaking,this is how serious lpin1 is
12.01.2022 It's official - have just posted information about the Shine for Thomas Foundation Race Day. Come and join the fun while at the same time supporting a worthy c...ause. Tickets can be purchased online with a credit card at https://www.registernow.com.au/secure/Register.aspx?ID=8743 or with direct deposit. Please share with all your friends. A huge thank you to Sonya and Lee from Crisp Signs for doing up our flyers for us. It is greatly appreciated.
12.01.2022 http://www.facebook.com/ShineForThomasFoundation?ref=hl Have finally established Shine for Thomas Foundation. All paperwork finalised. Please share our Foundation page with your friends to help us raise funds for awareness and research into this silent killer.
11.01.2022 We send our love and support to the Dean family today. Two years ago today, they lost their beautiful son, Thomas Lachlan Dean, to this condition. You are always in our thoughts.
09.01.2022 Hi guys. Just an update on the upcoming race day. General support for the lunch has been strong with approx. 160 confirmed attending. We have so far organise...d sponsors for 3 of the 7-8 races and have begun today a final push for sponsors using radio and newspaper contacts who we have. If that is successful, 40-50 more places will be sold hopefully in the next week or so as part of the sponsor package, leaving approx. 40 tickets available for the lunch. This is just to let you all know if you are intending to come and enjoy the day, sooner rather than later to secure tickets would be the message, as I don't know what is going to happen when the stories hit the radio and newspapers. Our venue is capped at 250 people. Please phone Andrew or Trudy or email [email protected] Thank you all for your support and hope to see many of you there. See more
05.01.2022 Looking for someone who might be able to help do up a flyer design for our upcoming "Charity Race Day". (My computer skills are limited so any help greatly appreciated).
04.01.2022 Our gorgeous boy Hudson.....
03.01.2022 Our thoughts and prayers are with the Diaz Burlinghame family who lost their beautiful 8 year old boy Joshua to LPIN1 yesterday. Heaven has welcomed another angel.
